Parenting a Child with Intellectual and Developmental Disabilities: Suggestions and Resourcesby Marlyn Wells
After pre-service training, Libby and Ben felt ready to welcome a child into their home. Two months after a baby boy was placed with them, however, they were struggling. The baby’s development was much slower than expected. He was sleeping more and eating less. Sometimes they even had to wake him to eat.
After many clinic visits and referrals their fears were confirmed–the baby was diagnosed with a genetic syndrome. He had delays in all areas. Libby and Ben knew little about intellectual and physical disabilities. Suddenly the gap between what this child needed and what they knew to do seemed huge.
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IDD and Children in Care
Intellectual and developmental disabilities (IDD) are gaps in development diagnosed at birth or in childhood. Developmental disabilities can be caused by a range of factors, including genetics; parental health, behaviors, or infections during pregnancy; complications during birth; or high levels of environmental toxins. In many cases, we don’t know the cause (CDC, 2015a).
Children do not outgrow IDD: it has a life-long impact. People with IDD often have difficulties in the following areas:
- Self care (e.g., bathing, etc.)
- Moving or mobility
- Personal decision-making
- Living independently
- Financial independence
Compared to other children, children born with disabilities are more likely to be maltreated and to enter the child welfare system. If they enter foster care, they often stay there longer. About 10% of kids in the general population have a developmental disability; estimates of IDD among children in foster care are much higher, and range from 20-60% (Nat’l Council on Disability, 2008).
Your Role Is Key!
Foster parents play a crucial role for children in care with IDD. Yet the journey of parenting these children can be difficult, especially at first. Here are some suggestions for those of you who find yourself on this challenging, rewarding path.
Learn all you can
Although there is a learning curve with every child, the learning curve with a child who has an intellectual and developmental disability often takes more time, follows a muddier path, and the effort is more emotionally and physically challenging.
However, this is a well-trod path. There are parents and professionals who have both loved and worked with kids with IDD and who have wisdom to share.
Understand how much you matter
All parents struggle with feelings of ignorance and uncertainty. Yet your role as nurturer, cook, disciplinarian, nurse, and host makes you very smart about the person in your care. Without the information you bring to the table, making decisions on behalf of the child becomes harder and less certain. Recognize–and make sure others recognize–that parents are key to helping the child.
Acknowledge your feelings
Caring for a child opens a window into emotions. Not all will be positive. Raising children is tiring. Caring for others is hard work.
Pay attention to your emotional health. It is important to acknowledge the “tough stuff” and the sad, scared, or angry feelings that may arise for you. If you give them room to be felt, moving forward is easier.
Get to know helping systems
Learn all you can about the many systems that can and will serve the child, such as school, health, DSS, and mental health. This will help you be sure you are involving the right professionals in the child’s care. It’ll also help you know where to go for answers to the questions that will come up for you.
To improve a child’s future, foster parents must know how to communicate effectively with professionals.
Writing an email requesting an evaluation, reading special education policy documents, speaking at a child and family team meeting, and listening at the high school awards banquet are the skills that will enable you to help a child live a fuller, more satisfying life. It’s possible to learn these important skills, and it is powerful to use them well.
To be an effective partner and advocate, it is important to show up and speak up. Attend teacher conferences, PTA meetings, and therapy sessions. Always go to child and family team meetings and IEP meetings. When you’re there, share your ideas and suggestions. Negotiate for services that are appropriate and important for your child. Negotiate for a full, rich life for the child. You may be the only one who knows it is possible.
You Are Not Alone
There are many agencies available to help you gain knowledge, learn skills, share stories, and be an advocate for children with intellectual and developmental disabilities. You can find a partial list in the box below.
Marlyn Wells is a program coordinator for the Exceptional Children’s Assistance Center.
NC Resources: Intellectual and Developmental Disabilities
~This list is not comprehensive~
|Family-Led/Supported Education & Advocacy Organizations
Arc of North Carolina. Provides advocacy and services to people with intellectual and developmental disabilities. 1-800-662-8706 – https://www.arcnc.orgAutism Society of North Carolina. Provides advocacy, training, education, and direct care services to individuals with autism, their families, and professionals.
1-800-442-2762 – https://www.autismsociety-nc.org/
Exceptional Children’s Assistance Center (ECAC). Provides information and resources to families of children and youth with special health care needs and disabilities. 1-800-962-6817 – https://www.ecac-parentcenter.org/
Family Support Network of NC. Provides resources to families, including connections to other families and resources in the community. 1-800-852-0042 – https://fsnnc.org/
National Alliance on Mental Illness (NAMI) NC. Offers support, education, advocacy, and public awareness to those affected by mental illness and their families. 1-800-451-9682 – https://naminc.org/
NC Families United. Family support and advocacy organization dedicated to improving the lives of children, youth, and families with emotional, behavioral, or mental health needs. 1-336-395-8828 – https://www.ncfamiliesunited.org/
University, Governmental Services Organizations
Disability Rights NC. Provides advocacy and legal services at no charge for people with disabilities across our state. 1-877-235-4210 – www.disabilityrightsnc.org
NC Department of Public Instruction. DPI’s Exceptional Children Division is charged with ensuring students with disabilities develop intellectually, physically, emotionally, and vocationally through an appropriate individualized education program in the least restrictive environment. 1-919-807-3969 – https://ec.ncpublicschools.gov
NC Division of Mental Health/Developmental Disabilities/Substance Abuse Services. Works with individuals to achieve a better quality of life and well-being. 1-919-733-7011 –www.ncdhhs.gov/divisions/mhddsas
NC Division of Vocational Rehabilitation. Provides counseling, training, education, transportation, job placement, assistive technology, and other support services to people with disabilities. 1-919-855-3500 – www.ncdhhs.gov/divisions/dvrs